Tag Archives: understanding

Invisible Illness – or how to multiply by three

People who see you in a café or on the street, who talk with you at work or in the shops see a normal young woman. Fairly decent looking, soft around the curves, blue eyes and a quick smile. They see a person whom they probably forget moments later as that’s what we do with
strangers – passersby who don’t occupy a permanent space in our continuum of daily routines.

Quite unremarkably, our daily lives evolve around our own needs, wants, routines – our very own do’s and don’ts. Those passersby wouldn’t “sense” the churn in your gut, the ping-pong match inside your head, the tremor in your hands which you keep deliberately constantly busy or in your pockets; you don’t mean to wave so much when you talk – it’s a means to an end. They wouldn’t notice the wobble in your legs or tightness in your chest, or mourn with you the sudden shorter haircut you just had (as you try to hide the drastic hair loss). FB_IMG_1447633471140

Even those closest to you whom you see or speak to nearly on a daily basis miss the signs – not due to any fault of their own, but rather because you have become a master of guises as varied as your symptoms. One for each day, person and definitely each situation, warranted or not. You know whom you can be weak with and whom not, though given the choice you wouldn’t anyway. So you put on an act.

With no outward, visible, tangible symptoms who would believe you anyway? You don’t ail the same way as they do, bounce back the way they do, snap out of it like they would, spend your times of remission they way the expect, or deal with your relapses as they have advised. So you must be okay.

It is an invisible illness as when you see me you see no scars, you see no bodily fluids oozing out of me in dramatic gushes and you don’t hear  me moan as I hold my forehead, a lady about to faint, softly and delicately. As one ought. But I don’t

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It can’t be that bad if you’re out and about, right? It  can’t be that – you ate that burger! It can’t be that bad when you can come to work.

They don’t know that going out is a form of self-medication; they don’t know how walking helps with pain or how socialising helps your mood despite being so doped on the meds they bump into you that you can barely follow a conversation.
Or you just needed a distraction, a feel for normalcy.

They don’t know that the day before that burger you ate nothing because even a sip of water would create cramps so violent you threw up pile and today you are feeling better – and ravenous. You got to take those moments because you don’t know when the next one comes around.

They don’t see how despair each morning when you discovery yet another piece of clothing you don’t fit in anymore as the medication that is helping you also comes with an anthology of side effects and makes your body distort. You win some you lose some.

They don’t see that the smile, quick wit and talent for banter you spout and the non-stop go-go-go you are at work is letting you try to be one of them, not the weak link, show yourself and them you can do it, you are valuable, you can be productive member of society – and that makes a difference for them and you. You are not alone.

Every invisible illness is as different as is every survivor. The coping mechanisms suit our needs, not your wants. Some want, yearn and demand their illness to be recognised, understood and seen so they don’t struggle alone. They want awareness. Some just want to plod along, un-judged and unnoticed. Move on and forget that today it took me an hour to convince myself to get out of bed and get dressed and go out just for a cup of tea so I feel like me, not like a piece of furniture. Some are (admittedly like the writer) stubborn and proud and hate nothing more than to be continuously seen as a patient, as someone who is sick, to be felt sorry for. The attention, pity, disbelief, worry, and resentment, the desperate want to help and want to make it better for you – it all piles up. And many in recovery tend to end up caring more for those wanting to help than helping themselves.

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“Pick yourself up, dust yourself off, puck up buttercup.
So much to look forward to, you can do it.
Try this, you’ll see, you’ll feel different.
It’s a new day, keep your head up.
It’ll pass, just take your meds.
You’re over-thinking it.
You don’t look sick.

It could be worse.
Snap out of it.”

See, that gig I went to? Did you see how I spent half of it crouched behind peoples’ legs as I couldn’t stand upright from pain? Or did you know I took the first sick leave in more than a year just so I could have time start the recovery my way – not yours. If it makes you feel better to scrutinize my way of weaving through this rotten hand I’ve been dealt with, telling everyone she must not be sick because she is walking, talking, socialising, or eating this and drinking that, that is your prerogative. But don’t do it behind my back, don’t analyze me without having a day in a body that is attacking you, or a mind that paints a picture you don’t quite grasp see or a brain that disconnects and connects at lightning speed from one thing to another. Talk to me. Look at me. See me.

If you don’t see me, don’t judge me – I might not do what you expected from me, but I am doing my best to do what is right for me. I am not you – I am a rainbow; and I quite like me.

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Should you, would you if you could?

A phone call. That is all it takes to change someone’s day, life or even a whole world.

A friend in need is not something to shy away from. There are too many who say I can’t do anything anyway, I can’t change anything anyway, I don’t want to get mixed up, I don’t want to be involved, I don’t want to be blamed… To change even one life is worth every bit of effort even on the risk of losing that person when they cannot see the need themselves yet.

Just a guy by Salzach

Just a guy by Salzach

For years I’ve known an ex soldier. But that is not all he is. He is also an ex-boyfriend, an ex-happy, and ex-bully, an alcoholic, an abuser, liar, he is one to make excuses and to blame others. He is also a great friend, confused, lovable, affectionate, intelligent, unafraid of putting himself in harms way if that means he could help, he is relentless getting the information he wants and if important he does not hesitate to share that information. He will stop at nothing to find a way for others, but fails at this continuously when it comes to himself. He is a good man, and he has a life in front of him that he does not yet understand.

I can’t do much. I’m too far away. But I will always be with him, for him and against him if I need to be. There is so much that can be done with just a phone call, just an email, just reaching out.

Never under estimate what you know is in for what you see on the out. Never underestimate the power of a single word.

Snippets of conversation and steps forward:

…I think he is in serious trouble now. After his friend died and him being the one discovering the body, he’s completely distraught and manic.

I spent an hour with him on the phone today. He was talking about a program he wants to get to get his drinking etc under control. The conversation didn’t go very well and he seemed to be in a very dark place. He had to go to a 7/11 and was to call me back after but somehow possibly due to the storm here we couldn’t get connected anymore.

Last he said in a message through Facebook is that he was on the phone turning himself in. I don’t know to whom or where he was calling or where he was turning himself in and he hasn’t answered me since.

Please check on him when you can and please let me know where he is and what is happening. I’m really worried. He hasn’t been this on edge in a while. I’m scared for him.

… I just got off the phone with him – he is in a mental hospital/rehab unit.  Does not know how long he will be in.

He went because you told him to! He was calm and stable…
… He’s my friend. I’ve been drawn to him since I first met him. He in such a dark place but he knows it and is continuously trying to find a way out of that place but he keeps failing. He’s in a place now that can hopefully help. I told him he needs to stay as long as possible, as long as he has tools to take care of himself, and only leave once there’s a support system set up on the outside once he leaves; he needs AA and therapy, probably for ever, maybe only for a while. But he needs it and he knows it. I told him I’m not afraid to get him committed again if he doesn’t stick to it, and I’m not afraid to get his mother involved…

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